Award-winning filmmaker Sharon Greytak says New Mobility’s ads are a problem. For one thing, why are only disability products hawked? Sure, she uses a wheelchair, she’s used one since she was 15, but that’s not all she uses. “I wear lipstick. I wear high heels. Where are the Revlon ads? The shoe ads?”
I’ve clung to a Los Angeles Times article about Greytak’s latest movie, Losing It, for over a year, hoping to write this profile. To make the film she traveled from Siberia to Sao Paulo, Brazil, interviewing others with disabilities, searching for the elusive “disability identity.” I want to know if she discovered it; she wants to talk about ads.
“I’ve got the magazine right in front of me,” she says. “Right now I’m looking at something for underpants. Protective underwear. And the catheter ads! … It’s repelling, it’s repulsive … this seems much more for a medical magazine than what I think your magazine is trying to do. I don’t know what this stuff does or where it goes.”
There is a tension between medical and living, an ambivalence–in New Mobility, in society, in our communities, in our schools and in our hearts–and Greytak puts her finger on that ambivalence every time.
“You shoot these movies with disabled people in them, but you’re hesitant about being interviewed for a magazine marketed toward disabled people,” I point out. “Why?”
It’s about that label, she says, the indelible one society seals us with that overlays anything else we may be or want to be, the one that has to do with fear. “It’s human nature to fear disability,” she says, “probably biological at it’s core, because it’s something that could happen to anyone.”
About this label … it seems like she’s searching to discover the contents of the “disability identity,” the stuff that’s in the sealed jar, but does not wish that identity for herself, I say.
“Right,” she answers. Then, “Actually, no, no! I don’t want this to come across as ‘I’m not a person with a disability,’ or ‘I don’t want to be seen that way.’ It’s more complex than that.”
In explanation, she points to how much she’s benefited from the disability rights movement. “I use the New York City buses all the time, and had advocates and activists not protested or done the things they had, those changes would not have happened.”
But being disabled does not mean having to also be an activist or advocate. She recalls how once, while strolling through Central Park with someone she was dating, she was picked out by a disabled activist handing out protest fliers. “He spotted me, I saw him run toward me and my date, and my date did not have a disability. It was me, it was me in the wheelchair that was the target. He ran up to us, chased us in fact and I turned and we walked away. I was mortified.” More than mortified. “I was really pissed off because I thought, ‘How dare you? How do you know what I’m about? You’re making this huge assumption that I would have an interest in this subject.”
People see that wheelchair and the assumptions fly.
The Artist as a Young Woman
Greytak’s initiation into the world of disability came in the mid 1960s, when she was 7 years old, heralded by high fevers and the tremendous pain that marks rheumatoid arthritis. Her family lived in Bridgeport, Conn., where Greytak attended parochial school, like her mother before her. She looked forward to skipping a grade, as her teacher suggested before she became ill. After she became ill the school had a much different suggestion in mind for the intelligent little girl who now used crutches. “The nuns told my mother, ‘There are special schools for children like Sharon.’” Greytak and her mother talked it over, “but I said, ‘I don’t want to go there, I don’t think the education’s any good.’” Her mother couldn’t convince the mother superior to let her back into school, but she did convince the parish priest, “and that’s how I avoided special ed.”
Greytak has said that, for her, being disabled is like straddling two worlds. There’s the world of disability, and then there’s the wider world, which often spurns the world of disability. She talks about her older brother, who inadvertently taught her how the wider world would see her. “He would tease me so much, like, ‘Oh, your boyfriend’s going to be in a wheelchair,’ and I guess through that I absorbed what society will think. I’ve always been very aware that people assume we’re all a group. I’ve always taken great care to not fortify that myth.”
It is in childhood that the mythology of the adult is laid down, and it is the rare child who can write her own myth. Yet to become the artist Greytak knew she wanted to be, even as a child, she had to create herself.
“I remember being a kid, and with rheumatoid arthritis you come to a disabled life slowly, it’s not an overnight thing, so I walked on crutches for a while and began using the wheelchair at age 15. I remember relatives, even strangers, citing oh, Helen Keller, and all the positive images, and I was really put off by all that. I was going to go to art school and be a painter, so I was reading all about painters throughout history–and I wondered why aren’t they giving me role models of painters? It was always disability. At that time Helen Keller may have been their only point of reference. I think that was an early way of them trying to determine how I would turn out to be, so I’m always on guard about how society is perceiving me.”
In the end, Greytak’s vision for her own life prevailed. After high school she studied fine arts at the Hartford Arts School at the University of Hartford. At first she was an abstract painter, putting kinetic images on static canvas. While at Hartford she worked with the painter David Salle, and studied experimental short films and sound fragments of her own artistic vision. By the time she finished grad school at CalArts, she gave up trying to force brushes to record her ideas and switched from paint to film. “In films there is an urgency, an immediacy for ideas I wanted to deal with, such as unconventional relationships,” says Greytak. “And in galleries people are not as combative or verbal.”
CalArts considers Greytak one of its “notable alumni”–class of ’82–citing her award-winning 1986 documentary, Weirded Out and Blown Away, which featured American disabled people talking about relationships ranging from sexual to social.
In 1989 she released her first feature film, Hearing Voices, a romantic story involving Erika, a beautiful model with hidden physical disabilities, and Lee, a gay man. The film’s abstract says, “Together Lee and Erika must find the core of their identities as they discover the multifaceted possibilities of love.”
The Love Lesson, released in 1996, was her second feature film. It explored the relationship of a 17-year-old HIV-positive heterosexual teen and his biological and adoptive mothers.
About her focus on unconventional relationships in film, Greytak says, “I don’t care if people say, ‘oh that’s not my experience,’ but these relationships do come out of some base in reality, and they’re something that I’ve not seen represented in mass culture, that I feel needs to be discussed, needs to be talked about.”
Identity, unconventional relationships … throughout her career, these are the topics Greytak becomes passionate about. Most recently she wanted to explore disability identity and the often unconventional relationships those who have disabilities forge with their societies and their cultures. So she decided to travel the world, to see what she would discover, and thus Losing It, a documentary featuring disabled people in Russia, Hong Kong, Italy, Brazil and America, was born.
Armed with a scaled-down filming crew and a digital camera, Greytak found herself stymied in Moscow by airline officials who acted as if they had never seen a wheelchair user before–perhaps they hadn’t. Alarmingly, customs wanted to confiscate Greytak’s equipment for at least three days, and she was due in Siberia in 11 hours. Losing It contains footage of her being held in Moscow’s airport infirmary, and her voice-over matter-of-factly proposes that perhaps in Russia, people such as herself are only seen as invalids, special baggage.
Red tape finally snipped, Greytak and her crew found their way into Siberia–the infamous hinterland–where Greytak found Russia’s soul to be warm, educated and equipped with a sense of history not found in the U.S. She also found a young man whose situation became the soul of the film: Fyodor, who speaks four languages fluently, and gently speaks about his place as a disabled young man in his society. Because of how his cerebral palsy is viewed, he has been denied opportunities to even enjoy the social commerce friendships bring: “Friends–they come to me sometimes, but very seldom,” he sighs. Then he philosophizes, “I am only part of the world. There are many such people as me.”
“It drives me crazy to think what his future will be,” says Greytak.
Larisa, the other Siberian wheelchair user featured, talks about how far Russia has come in even the last 10 years, and how there isn’t enough money, really, for most Russians, let alone disabled Russians. To reinforce this, Greytak has footage of a young child in coat and cap tugging on the coats of passersby, begging.
Until recently, disability identity in Russia could be boiled down to two words: Hide them. Not much different than it used to be not so long ago in America, notes Greytak.
Yet there is an intimacy among the disabled Siberian women who swim at a steamy bath house that is not seen here, in our nation, and it’s enviable. The lack of self-consciousness the women exhibit is evident in many other cultures as well, says Greytak. “I’ve noticed in other countries there’s a natural sense of body. Here we have a puritanical history, the medicalization of disability, and the notion of individual achievement. So we don’t touch very much.”
In every nation featured, with each individual interviewed, Greytak juxtaposes images with her subject’s words, to strengthen the points or to bring the subject’s own ambivalence with his or her place as a disabled person to light. This is especially seen in the section about Hong Kong resident Edith Mok, a superachiever 80-hours-a-week executive who is now, post-stroke, a superachiever rehab machine. She says it is her job, now, to become better. As she speaks, market scenes of butchers chopping the heads off of fish and throwing eels to the side play across the screen. “There’s a real sense of disregard in those shots for me,” notes Greytak.
And for the viewer, too.
Greytak discovered that attitudes toward disabled people evolve at different paces in different cultures and nations, but patterns do emerge. For example, Italy and Brazil have some marked similarities not shared by the U.S. “There is this notion of, ‘We will help you, why should we break those stairs down, you don’t need to go there,’” says Greytak. “The families are still the old-fashioned families that feel they have to take care of the sick kid or disabled adult–that’s their cross to bear.”
Both Italy and Hong Kong, and of course the United States, have more economic resources than either Brazil or Russia, which lag behind in enforced legal rights. Yet, Russia’s “hide them” mentality is reversed in Brazil, where Edna, the wheelchair user interviewed by Greytak, sells candy to cars that stop at her intersection. There also doesn’t seem to be the type of community shunning that robs Fyodor of the social life he would enjoy if he lived in another nation, or perhaps just another time. Although if he lived as a disabled man in any other nation, he may not have the same exposure to culture that seems to be an integral part of the Russian soul. Even if he were an educated nondisabled American, he may only know one language instead of four.
“Societies will evolve at different paces, at different rates,” says Greytak. “I had to let go a little bit and accept that.”
Individuals with disabilities, although certainly shaped by the resident culture, often share a similar world view, says Greytak. “What we have in common is that we have insights many people will never get to know. It sounds simple, but there’s a wisdom we have that takes most people a lifetime to get to, if they ever do. I think we face the real core of life, the often contradictory struggles of life, and have to decide what we think about that.”
That ability to face the “real core of life” is a gift, she says. “I can go straight to something quicker than most people because they get lost in all these things they think are important.”
And what did Greytak find about her own identity? “It’s hard to say. I found so many of the stories mirrored what I experience.”
In the meantime, “I am not willing to wait for that day in the future, probably past my lifetime, where there is equality with regard to disability–when someone proclaims that the battle for ordinary things in life is done. I insist on that life now.”
Yet, really, like most people with disabilities, Greytak is not defined by what her body can and cannot do, or even how those abilities or inabilities shape her. Her identity was, is and probably always will be best summed up in one word: Artist.